Month: April 2016

I feel like I’ve been going through a lengthy internal revision of my understanding of myself, and now I’m facing the challenge of having to translate that new understanding for a world that has its own…what? Preconceptions? Misconceptions? Bit of both, really, so…pre-misconceptions? Yes! Let’s say the world has a lot of pre-misconceptions about autism.

Of course, that’s exactly why I want to start speaking and writing more openly about autism. One thing I have realized over the past six months is that it has been primarily the words of other Autistic people that have contributed the most to my understanding of autism. I want to add my own words to theirs, and to help dispel some of the misinformation and stigma that surrounds this particular way of being. With that in mind, I first want to explain this to my immediate family, in particular to my parents.

But I am apprehensive. I don’t know what they know about autism, and I don’t know how they will react. They have been very open-minded when it comes to intellectual and developmental disabilities overall — my sister has Down syndrome, as have most of her friends all her life, and they have always fought for her right to have a good life and make her own choices. But as far as I know, their experience of autism has been limited to the, well, more limited diagnoses given in the 1980s, rather than the full-spectrum understanding that I would like them to have.

And also…I was always the “able” child in their eyes. How do I tell them, 43 years later, that they had not one disabled child, but two?

I will be visiting them tomorrow and staying for a couple of days. My intention is to bring this up at some point during my visit, and to provide them with some articles that they can read for information. (I’ll share links to the material I’m bringing at the end of this post.) I’ve also written up a short “script” that I can either use or not, depending on how well I am able to keep my thoughts focused in the moment. I might share that script in a future post, or I might not — but I will post again about this topic, to let you know how it goes. 🙂

As I go into this, I am trying to remain cognizant of two things: first, that my parents don’t necessarily have the same background information I do, and second, that it will take time to convey the information that I have to them. But perhaps a bigger thing to keep in mind is that I don’t need them to accept this right away; I am not asking their permission to be Autistic, after all. I am just informing them of something that is true, and letting them know that I plan to speak it about more openly in the future. If they need some time to take it in, then that is what they need.

This is not my first April; in fact, it’s my 43rd. It’s not my first “Autism Awareness Day,” either; I’ve been around for all of them so far. But this will be my first April knowing — or shall I say, being aware — that I am Autistic myself.

Interestingly, all of those earlier “Autism Awareness” campaigns I’ve seen didn’t help me come to this understanding, this awareness, about myself. None of them helped me understand that they were talking about me. This should raise some questions about how well these “awareness” campaigns work, or at least about what kind of awareness they are raising.

I’m not looking forward to experiencing these campaigns this month. For one thing, I’ve come to understand just how misleading they are, and my impulse to correct inaccurate information will certainly be rearing its potentially-inappropriate head. For another, I am only just starting to approach the issue of disclosure with my family, so it’s hard to know how to address this topic at all since I’m not yet “publicly” Autistic. This leads to anxiety and a whole lot of second-guessing of myself.

Some frustration is really due to impatience, I know. It’s hard, sometimes, to remember that other people haven’t magically acquired the same understanding I have. It has taken me months of intensive reading, discussion, and self-observation to learn what I’ve learned — and I’m still learning more. Other people, even those close to me, are not going to have the same level of motivation that I did…and they also won’t have my Aspie focus. *grin*

So mostly I’m just reminding myself to breathe, and not feel like I have to single-handedly inform everyone I meet. I can’t instantly “fix” everyone’s mistaken impressions. I can’t hold up my hands and stop everyone from listening to the (very well-funded and widespread) misinformation being propagated by groups like Autism Speaks — and it’s most likely counter-productive to get mad at people for not already knowing that it is misinformation when they may not have been exposed to good information.

Changing attitudes takes time and repetition, so I am grateful to everyone who has been speaking up, over and over, in support of the acceptance, value, and equality of Autistic people instead of some limited concept of awareness. It has been your stories that have led me to true awareness and understanding of my own neurology and how it has shaped my life. Thank you.